Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Monday, September 10, 2012

Our Story Continues...Maybe it's not ADEM...

Christmas passes, and it's a new year. We are doing well. Hailey is walking on her own, her speech is way better, she's been off steroids for over 6 weeks and she had been RE-potty trained. Potty training the first time was hard enough. I had to do it twice so far. With ADEM they say that if you can make it 6 months without having a relapse the chances of another episode are pretty slim...not impossible, just slim.
School starts back up and Hailey really loves taking the bus. On Wednesday January 11th things seem as normal as the day before and the day before that. She goes to school I'm at home doing my thing and before I know it the bus is dropping Hailey off. The bus driver said that Hailey is crying and her pants are soaked from her wetting herself and I just figure she had an accident, no biggie. The stairs are still a problem so I help go upstairs so I can give her a bath. The water is running and I take her ponytail out and tousle her hair. When I do I feel a HUGE goose egg on the right side of her head. Like abnormally big for a goose egg. I ask her if she has an owie and she said she bumped her head. I didn't get a call from the school or the teacher or a nurse or anyone and this obviously happened at school. I grab my phone to call and I look in Hailey's backpack and there was a little note that said. Hailey bumped her head at school, but seems fine.

WHAT?!?!?!

Maybe for a normal kid, but not for one that obviously has neurological issues. I am freaking out! I call but there is no answer so I have to leave a message. A very urgent, not very polite message. I didn't understand how I could have just got a note in a backpack after my child suffers a head injury. I call Josh and tell him what is going on. Hailey isn't acting off or crying or falling while she walks so maybe it is just a bump. Kids get bumps and bruises right? Even though I try to avoid my kid getting bumps, bruises, and scraps I guess it can never be 100% avoided.

The next morning I get a call back from the teacher and she said that Hailey did trip and fall and hit her head on a cube chair. It was right as they were walking to the bus and she didn't think more then a note was necessary. (I'm just paraphrasing, I don't remember the exact words she said but it was similar to that.) From that point on I need to be made aware of anything that happens to Hailey no matter how big or small. Hailey will go to school and if anything is off I will get a call.

Hailey goes to school and towards the time when the bus is going to drop her off I get a call. The teacher tells me Hailey's balance was off and she fell twice with no one around her. My heart is racing. Is this happening AGAIN?!? I get Hailey off the bus and it's obvious things are not right. She can't walk straight at all. I call Josh and tell him I am calling the neurologist. The Dr. isn't there so I talk to the on call doc. He said that I should take her to emergency and he'll meet us there after he's done with his clinic (after 5:00pm)

We take Hailey back to the emergency room and they admit her with ATAXIA

I don't think I ever even knew exactly what that meant for the longest while. I never looked up the definition of Ataxia. I just guessed what it was. So this is a new neurologist. He does work in the same office as our original doc. He said that he wants Hailey admitted and scheduled for an MRI. I tell him that she JUST had an MRI about a month ago but we never got the results because our appointment for that is next month. So we'll be at the hospital and she'll have an MRI in the morning. For some odd reason I think to myself tomorrow is Friday the 13th. My mom is from Peru and Friday the 13th is a lucky day, but it wasn't for us.